Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

? for women...Space issue?

This is for the women of the group (no offense men)
I was told by my Nephrologist that my kidneys were very enlarged and that my biggest problem over the next ten years would be "cosmetic"...that by the age of 45 (I'm 33 now...recently diagnosed) my stomach would be very protruded and that I would be quite uncomfortable. He also "implied" that I would most likely need a transplant due to this...not renal failure. Has anyone experienced this problem...or has anyone had the transplant for this reason? Just trying to get informed. :)

The &quot;D&quot; in PKD stands for disease. How many diseases involving internal organs can be called &quot;cosmetic&quot;.

Depending on what type of PKD you have and how you look after yourself (i.e. nutrition, fitness, etc...), the growth of your kidneys can't be accurately determined.

If it is as he says, and your stomach is protruding, the kidneys are so big that they're pushing on other organs. They might be near renal failure. Did he care to mention about the pain?

Transplants aren't the end all either. Live transplants will give you 20 to 30 years. Dead (or recently deceased) transplants will give you 6 to 8.

I know someone on this site, that is female (30's) and she said her kidneys could be physically felt from her stomach, side, and back. She was diagnosed at 16, so that's how it got so big by her 30's. Unfortunatly, she hasn't been online for a while now.

Hi, just joined so that I could reply! I was diagnosed 2 years ago, and was already expanding but didn't know why. My kidney function is unchanged at about 60% but I continue to grow - kidneys and liver are massively enlarged and really quite uncomfortable all the time now. That's on top of the pain, which varies. Transplant has only been mentioned in relation to failure. It seems you just have to put up with it, but I am getting fed up with being asked if I'm pregnant. i feel like walking round with a sign over my head saying, &quot;I'm not!&quot;

I don't know how much bigger I will get, but I gather that it can start to interfere with eating (no space) and breathing (crushed lungs). I try not to think about that too much - deal with it when it happens, and just keep buying new clothes.

Hi! I was diagnosed at 4 years old, now I'm 42 and recently started nursing college. My Dr. could feel the cysts on my kidneys when I was a little girl. I was also told I wouldn't see 7.hmmm...I think everybody is unique with this disease. I can't imagine a Dr. transplanting for cosmetic reasons if someone else is waiting for a kidney to live...but I'm not a Dr.. I will say one thing, I stopped drinking all coffee and caffeine and the pain when away. I'm not protruded in the abdomen from my kidneys but some people do. I also stay away from salt as best as I can and I keep my blood pressure under control. Just keep studying about the disease online and in books to get informed..I just have been doing it recently because I've been in denial all these years and now I've decided to take care of myself. Keep smiling everybody and keep positive!!

My kidneys are very large and I walk around looking like Chewitt, pregnant! And to top that off I'm 51, with white hair and get some really odd looks from some people but have yet to be asked if I'm prgnant. It is very uncomfortable,&amp; I have to keep buying bigger and bigger clothes.

My kidneys are HUGE. I am 44 and my creatinine is 2.5, so I still hav esome function left.

I am lucky that I look young for my age, so everyone ALWAYS asks when I am due. Lately, my answer has been &quot;never.&quot; But I understand why people think I am pregnant as my stomch protrudes and my belly button sticks out like a pregnant woman's. My nephrologist said that my kidneys would be removed when I have a transplant in order to make room for the new one and to increse my comfort. But he never suggested a transplant with functioning kidneys!

Dear 4myboys,
I have been dealing with PKD for a long time. I am 47 years old. I did have a large abdomen until the kidneys got to 6 1/2lbs each. They were the size of NFL footballs.
as you probably know your kidneys are supposed to be the size of your fist. They began messing with other organs especially my intestines. The intestines were being squished so bad I couldn't eat anything. So I had to have a bilateral nephrectomy (both kidneys removed). Went immediately on dialysis. I did dialysis at a center for 1 year when my husband and I decided to do our own hemo dialysis at home. After another year on dialysis we decided to go for a transplnt. 4 months later, August,08 I received a kidney transplant. Best thing ever! I feel better, look better and most importantly I am better. Its been 6 months now. I cannot say all my problems are gone but these other smaller problems I can deal with. Hang in there, do your own research, get a good nephrologist that listens to YOU, stay positive, and most importantly keep fighting!

Well, I don't know if there are any other guys in this group, but I am new here and I am going to reply. I am 48 still with full kidney function, but I am increasingly having discomfort and pains in my back, ribs and abdomen that I am chalking up to enlarging kidneys that are trying to crowd out everything else. A recent catscan showed I have one cyst that is the size of a softball. What kind of pains does everyone get associated with the enlarging kidneys?

WardS: I have the exact same pains in the same areas. I don't know exactly how big my cysts are or how enlarged my kidneys are in comparison to anything but I'm going to be seeing a nephrologist for the first time on Thurs. and he/she is going to have my CT films so I'll be able to find out then.

I too have perfect kidney function and in another thread in this group some members are trying to find answers as to why that is.

(Not that we're complaining of course, but it is interesting to know how it can be possible with having so much damage being caused by the cysts.)

I'm in constant discomfort and whenever it feels like it I'll have pain ranging from anywhere to a 4 and sometimes to a 13....when it gets that bad though I usually either go to the ER or set up a Dr. appointment because everytime it's been that bad I've had a kidney infection due to a popped cyst. I think with them being squished around so much this probably causes them to rupture. Again, these are more questions to ask my neph.

Hi WardS, welcome to the group. I have massively enlarged kidneys and liver, and experience a great deal of discomfort and pain. This can be in the back, abdomen, under the ribs - anywhere from groin to shoulders really. Apparently, some of this is from the organs themselves, some from pressure on nerves supplying nearby tissue, some just from squashing. I also have very severe indigestion, and bending down/over is very uncomfortable. I have to change position a lot at night to keep up with the moving pain. Too much pressure in one place for any length of time is bad. You just have to keep moving!

My mother has PKD and is 80 years old with full kidney function. Until a couple of weeks ago I think I was assuming I might be as fortunate. However I ended up in the ER then with back and (left) chest pain that I did not know if it was heart, back, kidney or what. Of course it was a couple of ruptured cysts. That's when they did a catscan and showed my how big some of the cysts (and kidneys) have become. I have realized now that much of my back pain over the last year sleeping is probably kidney related. I am no longer assuming that my kidneys are going to outlast me.

Hi All Of You~
I have terrible terrible pain as well.. I on top of PKD also get uric acid kidney stones constantly. I had 4 surgerys last year to remove them as they were 9 and 10 mm stones stuck in ureter... My nephrologist has said that my kidneys function at 100% and that i have well over 100 - 150 cyst way too many to count. They cant see my kidneys on cat scans they havee to look at sections. My kidneys do go into my stomache and im only able to eat 1 meal a day as theres no room and constant pain and pressure.i have noticed that when i dont get my cyst drained well the biggest ones i start having non stop pain i usually go get cyst aspiration done every 6 months but now it has been 11 months as i dread going in cuz it hurts like heck when they do it and your awake the whole time... it usually only gives little relief for about a few weeks then new cyst come in..Im 32 but was 24 when finally diagnosed .Dr found first couple cyst when 19 and told me it was nothing......... I look Prego as well and get asked all the time when im due. Yeah this sucks!!!! gotta ask a question 2 all of you.. Do any of you hurt when asleep so bad that you have to sleep sitting straight up. cuz that is me im only good to lay down for a few hrs then the pressure from my kidneys and all my cyst maks my back and kidneys hurt so badd that it feels like my lungs are crushed and cant barely breathe i cant roll over or get up and just cry.. Anyone else go thru this it usuallt takes a good 3 hrs for my kidneys to fall back down and sit where they are suppose to beffore i can move around and then pain is not as bad. Some days im fine and others feels like im dying and cant move. My kidney dr says its because of gravity when lying down??? I have asked for transplant cuz of all the pain and they say nope i cant that i want to keep my own as long as i can and that my own function at 100% just irritated i bought adjustable bed and no help and slept in recliner last night still woke up screaming and hurting so bad .. any suggestions????

Hi CelineD. Sorry you're experiencing so much pain. You've probably tried all sorts, but I sleep with lots of pillows. I lie on my side, with a pillow under the &quot;bump&quot;, and one between my legs. this position alternates through the night with lying on my back with a pillow under my legs, feet over the end, and one under one arm (also got neck/shoulder/wrist problems). Too long spent in amy one positon leads to increased pain, but I'm up and down all night going to the bathroom, so I have to move. My husband can't understand why I'm always tired!
Take care.

I am sorry to hear that everyone is in pain of some sort, but at least we know that we are not alone. I came down with a bad case of a stomach bug a week ago that dehydrated me and made the kidney pains come back. I am relatively pain free during the day but at night have to turn over a lot. The night after the dehydration I did not think I could sleep through the abdominal pain but Vicadin seemed to get me through it. I also have GIRD (reflux) and get full quickly at meals, both of which I now attribute to the growing kidneys. If I have to be awake during a cyst draining I think I will think twice before doing it.

I have PKD but my brother is clear. He has offered me one of his kidneys.What is the procedure to find out if he is a compatible donor? Do we need to be tested at the same time in the same hospital? (As I wrote in this forum about a month ago, Chinese medicine seems to be working for me. I'm hoping that I'll never need a transplant, but it doesn't hurt to get tested, I hope!)

Hi, I am 59 years old and was diagnosed with PKD in 1982. Myself and 3 siblings got PKD from my Dad's side of the family. His mother had kidney disease. It skipped my Dad's generation and 3 other siblings and myself got PKD. I was diagnosed with stage 5 on 12/12/2017 and have been on dialysis since 12/15/2017.I am scheduled to go for a consultation on March 8 for PD dialysis. I am...

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